Thursday, 18 November 2010

Autistic with spoons

Autistic with spoons? Autism and spoons? Here’s my attempt at a variation on the spoon theory.

We all have spoons. There are no stereotypes for spoons. Everyone’s spoons are different, everyone has a different numbers of spoons which fluxuate. Everyone uses their spoons in different ways. And maybe your spoons don’t even look like spoons!

I think I know my own spoons quite well, I have learnt to recognise (and respect) them as I have become older. Some spoons I can hide. C seems to know when I have lost a few spoons!

And C’s spoons from motherly intuition and my perception of them over many years I have some sort of idea. But I have no idea how many C has at any one time. He has ones for many more things than I do - noise, light, colour, smell, sharing personal space, things around him, movements, processing, feelings, thoughts, communicating, bodily functions, positions, health, head banging, keeping clothes on, standing up, rocking, flicking, eye poking - and many many others I just have no clue to. Nor no clue as to how they really affect him. Before during and after juggling.

Some days C is better at juggling his spoons than others.

Some days he may have woken up with fewer or more spoons than usual?

Some days some spoons maybe bigger than shovels and C is intensely aware of spoons that he can usually ignore.

Social interactions for C uses up lots of spoons so he very rarely does it and then only if he has spoons in abundance. Making him ‘appear’ severely socially isolated.

C’s spoons do not conform to many NT spoon rules. C’s spoons can be extreme - obvious or invisible. C’s spoons like to keep me on my toes :)

Some days C drops his spoons one by one – if I have been watching closely I can see this happening and sometimes I can distract him, divert him or remove him where possible before he loses too many.

We have both learnt different tactics for clutching on to the few remaining spoons. C learnt to put his fingers in his ears, to hum, to rock, to focus on an object (used to be a chopstick now it’s his thumb nail).

I have learnt where to position him, distract him with my predictable movements or by mirroring him, using behaviours he recognises, or maybe playful ‘ritualised exchanges’ like I kiss him on the nose with my finger. This seems to sometimes ground him (if he hasn’t lost too many spoons by then) or my making happy sounds that he makes. Looking deep in his eyes - Positive and reassuring. Etc

But if C didn’t drop them one by one, if all his spoons just spectacularly crashed and there is nothing he or I can do and he over loads, melts down, fragments – whatever you like to call it. All I can do to help him is to get him to a safe quiet place to recharge/process/pick up some of his spoons.

And I do the same as I also will have lost a few by then.

On reflection there is always something to learn, something I may have missed. And so the next time I try something slightly different (yet familiar and recognisable). We have built on this and evolved our routines opening up C’s world. I learnt to read the function of some of C’s spoons by being sensitive, mindful, watching and listening. It’s been hard work and some things have taken years - but C’s arsenal of spoons that he can juggle is growing and changing all the time - it has been so worth it and now we can go just about anywhere. And try anything.

We have a connection. He trusts me even when I get it wrong sometimes and drop the odd spoon.

Love that theory! I guess you didn't want to have to be so amazing but you really are! Have you thought about writing a book? People like me - at the start of their journey with their children with autism - can learn a lot from you.....

That is a very inspiring spoon theory! I think it's that beautiful dance moms and their kids have, mirroring, anticipating, understanding on a deeper level. I can totally relate to spoon theory with my own child- I don't notice it so much at home but out amongst others I start to notice what I am doing with my spoons and my daughters.

The spoon theory is very good. We all have them but I have never thought about them in that way before.Lets hope we don't lose too many or drop them.It must be awful to be out of control when they do all fall together. Frightening for C & everyone else.Thanks for explaining things.Maggie X

I have just read the 'spoon' theory & think it is brilliant. I have been 1 of the very lucky ones to recover from ME/CFS or whatever you want to call it, which is a horrible, debilitating illness which many people still pass off as stress, or yupie flu as it was known in the late 80's when I had it as a teenager. To have been able to explain it using the spoon theory would have been brilliant. I don't think I have ever related to a description so well. I can also see this fits for aspergers and most things, and I think its a theory I will carry with me now. Thanks for posting the link and for your version.

What a great post, I certainly agree. I remind myself often, that my daughter may have woken up with less spoons than the day before and my patience will have to adjust accordingly. You sound so insightful of your sons needs.